Need 2nd Kidney after cancer, chemo, radiation......

[Save_Linda]

I am Michelle and here because of my sister-in-law and bestfriend, Linda.  Here is her story....

In 1991 she had a kidney transplant from a living family donor....her older brother.  She was fortunate because the kidney worked very well for her until she developed breast cancer about 12 years later from the immuno-suppressant therapy she was on.  After a partial mastectomy, months of chemotherapy and radiation she is now cancer free.  The University of Michigan will not do another kidney transplant for her until she has been cancer free for 5 years (although she has another living donor/relative willing and ready).  We have until August before she is elgible.  On the other hand we are facing more issues.  She is currently on hemo and going to the clinic 3 days a week, but the family doesn't have much confidence in them.  For one she doesn't get to see her nephrologist when she needs to.  He is only available to her through the nurses at the clinic and they are the ones we are not so confident in.  Her port (a temporary...before her permacath...long story) had become blocked due to her blood being too thick so the dialysis center sent her home and never even called the doctor.  This  was on a Monday and she had not had dialysis sense the Friday before.  They send her home and do not finish dialysis...she was hooked about an hour or so.  No answers or anything. 

The next day I took her to the E.R. because we had been dealing with her lung filling with fluid and having to have that tapped several times with no answers of why it was happening and what they could do to stop it.  She literally could not get a breath into her lungs so I took her to a bigger hospital we had more confidence in.  She had lung surgery and they took her to dialysis almost daily.  It was a very rough 14 day stay, but she came out of it with her lungs in better condition and feeling better (so we thought).  They put in a permacath and got her blood thinned out, but during the lung surgery she apparently had some bursts of strokes.  Now it is two weeks home and she has been going back to her dialysis center with no doctor following her care (she can't see her nephrologist EVER....only talk to the nurses...he doesn't do appts?). Today I saw her for Easter Dinner and she was so miserable.  Couldn't breath. 

I do not know what to do.  Her husband took her back to the larger/better hospital and they admitted her again.  The fluid has returned in her lung/s and she is so hugely swollen (face/arms) despite losing so much weight and only weighing 100 pounds.  She is so sick now I feel like she will not be able to have a transplant even if we could find a hospital to do it sooner.  Has this happened to anyone else?  She has been in and out of the hospital so much in the last year that I can see where she would just want to give up.  I just don't know how to keep encouraging her to hang in there.  Please tell me this is all normal and that things will get better.  She has been on dialysis for I believe 3 years now and it has been one infection after another with the access sites.  Is this normal?  She doesn't want a fistula because it is permanent.
I am really here for support, ideas, and knowledge that I can pass on to our family.

Thanks,
Michelle

[Sluff]

Wow Michelle,

What an introduction. I personally can not answer the questions that you ask, however you will have answers or at least some recommendations soon because with all our members here at IHD, they always come through. We have become one big family here always helping each other with advice and encouragement.

You are such a good friend for trying to help and advocate for Linda. The only advice I can give is maybe you can get a social worker involved to aid in protecting Linda's rights.

As for you here is a hug  for being what might possibly be the best decision you ever made for Linda by joining IHD.

Good Luck and keep us posted.

Sluff/ Admin

[goofynina]

Hi Michelle, Welcome to ihatedialysis.com, Goofynina here, remember me?   I am sorry for what your sister-in-law is going through and it is very considerate of you to step up and find answers.  First of all, what do you mean she cant see her Neph EVER??  You need to find one that she can see and immediately.  That is one of the most absurd things i have heard,  i am sure that damn doctor is quick to collect the damn $$ though huh?  Well, enough of that.  It sounds to me that she needs to get a proper working fistula that she can dialyze normally with no interruptions.  I am in awe of what i just read she has been going through.  Please know we are here to answer questions and give our support the best that we can.  You hang in there and hope to hear more from you soon.   


Goofynina/Admin.

[elizabetht]

Hi Linda and welcome. I am a care giver too and I know how hard it is to see someone go through all of this. I hardly know where to begin to help you.  You have many issues to cope with. May I suggest that you find a new medical team. The things that are being done are unconscionable. Go the hospitals you trust. Find a doctor you trust. Find a dialysis center that helpsnot acts as an irritant. I have been told that a permanent fistula does decrease the risk of infection even if it is permanent.  I don't know how you get people to do there job but the bigger hospitals seem to be helping more.  Contact a social worker there and ask for help. If all else fails, there are attorneys who specialize in legal issues for the disabled. Before you go that far however, it would be wise for your sister in law to start a log. Went to center on such and such date and time.  Was told by _____ that I could not see the doctor. Treatment A failed to rectify problem. Failure to follow-up. Returned to larger hospital where they did ______________ and so on. I know this sounds tedious and it is. It is necessary if legal action is ever necessary.  Remember, the hospital and dialysis center are keeping detailed notes about everything they need. If you contest what they say you must have documentation.  When I was taking a really upper level statistics course, my professor had a sign on his door. "In God we trust, all others must have data". Tell your sister in law to start generating that data. It is surprising how much more attention you get from medical professionals when things are in writing. Keep a paper trail girl. Focus on what you can do to improve the present situation.  Another transplant may come later.

[Joe Paul]

Welcome Michelle, good to have you aboard.

[boxman55]

Welcome Michelle, please talk her into attempting a fistula. It affords you the best dialysis as for as blood flow goes. and the better the dialysis the better she will start to feel.-Boxman55

[kitkatz]

Welcome to the site. I hope you find time to read all of the great information that is here.   We are a pretty friendly group. Enjoy yourself!


Kitkatz,moderator

[Bajanne]

What a challenge some people have!!!  I am really feeling it for your friend.  There isn't much I can advise personally because I am in a different territory.  However, I would advise her to have the fistula.  So what if it is permanent?  The temporary ones are temporary because they have a higher risk of infection, as she has already discovered.  You don't really hear of infections with fistulas or grafts (at least, I haven't)
Before I was diagnosed with ESRD, I had lung problems as well.
But I applaud you for being there for your friend, and you will find that you have discovered a caring community/family right here in IHD.
Here is a group hug for you and Linda.



Bajanne, Moderator

[anja]

   Michelle and Linda!  Glad you have joined the community!  So sorry to hear about all the trials you have gone through, Linda, and for going through them with your best friend, Michelle.  You are so lucky to have each other during these difficult times.  I hope things get easier and start looking up!   

[Rerun]

Michelle welcome to IHD.  You get the truth here. 

Linda will have no sympathy from anyone because she is refusing treatment by not accepting a fistula.  She is in denial if she thinks a fistula is permanent and kidney failure isn't.  She has kidney failure and transplant or no she needs a fistula because transplants don't last forever. 

The lowered immune system does increase the risk of cancer.  So if she gets another transplant she will "again" be on immunosuppressant drugs and "again" her risk of cancer will increase.  You take the good with the bad.

She has already lived 12 plus years longer than she would have without kidney dialysis and transplant drugs.

Kidney failure isn't pretty and neither is a fistula.  She needs to get one.  I hated the thought and I hate needles but I am just so glad mine finally works that I'll take it.

Best of luck.

Rerun, Moderator

[Rose From OZ]

Hi Michelle, Welcome!! What a rough time Linda has had doesnt seem like things are going her way right now  I cant help with any of the questions you have asked but I hope things get better for her,

[AlasdairUK]

Just to harp on about the fistula that a few others have mentioned. It is the best form of dialysis and will stop any infections. She will feel better with the extra clearance. It might be permanent but so is kidney failure and having a fistula is at least part of your body rather than having a plastic tube sticking out of you.

[Earlinda]

Hi Michelle!    God bless you for being such a dedicated sister-in-law and friend to Linda.  You all must have a special bond that is hard to find these days.  Anyway, I do agree that a fistula would be great for Linda.  I can see her point of it being permanent, but, I for one am very proud of mine.  I admit it isn't pretty to look at but no one ever says a word about it or asks questions and I wear short sleeves all the time.  If someone does ask a question I find it an opportunity to tell people about ESRD and educate them on the importance of organ donation.  I do hope that Linda gets to feeling better soon.  She has been through an awful lot lately.

Earlinda

[Duane]

Greetings Michelle and Linda

I agree, the fistula is the way to go. Fistula Surgeons are gearing up for the high demand of quality installs, it's the future, the fistula.

Let your heart guide and direct your path, follow the  true path and all will be well.




EDITED: Removed picture - Sluff/ Admin